You just got the phone call from your son or daughter: Your new grandchild has Down syndrome. You might be speechless. You might be outraged, distraught, frightened, or overwhelmed. One thing you’re not, however, is alone.
The Facts About DS
According to the Mayo Clinic, Down syndrome is the most common genetic cause of severe learning disabilities in children. In the United States, nearly 6,000 babies are born with Down syndrome each year.
Down syndrome is named after John Langdon Down, the doctor who first identified the genetic condition in 1866. When babies are conceived, they typically inherit 23 chromosomes from their mothers and 23 from their fathers. Children with Down syndrome, though, have an extra chromosome — actually a tripling of their 21st chromosome — giving them a total of 47 instead of 46. (The condition is usually detected before a child is born.) This extra genetic material causes the delays in mental and physical development typical in children with the condition.
The effects of Down syndrome are both physical and intellectual. Babies with DS have little mouths and little noses and almond-shaped eyes. Some have a crook in their little finger. Some have a space separating their big toe from the rest of their toes. Many have heart defects, but most can be cured. All will grow and develop, though more slowly than their typical peers. Because babies with DS have low muscle tone, it will take them longer to sit up, to stand and to walk. But in time they will do all these things. Early intervention is key, as is family support.
Down syndrome can be detected in utero, and about 90 percent of women today chose to have an abortion when told their baby has an extra chromosome. Three years ago, Dr. Brian Skotko of Children’s Hospital Boston, whose sister has DS, conducted a research study which detailed the negative way in which most doctors told parents that their babies would have DS. Skotko then worked with Sens. Edward Kennedy (D-MA) and Sam Brownback (R-KS) on legislation to change the medical community's approach. On October 8, 2008, President Bush signed into law the Prenatally and Postnatally Diagnosed Conditions Awareness Act. The law mandates that medical professionals provide parents accurate, up-to-date information about DS and other conditions, as well as appropriate support services. The law also calls for the creation of a registry of parents willing to adopt children with disabilities.
The new law reflects the reality that life for people with DS has improved dramatically in recent decades. In 1929, a child born with DS rarely lived past the age of 10. Today, according to the National Down Syndrome Society, average life expectancy for people with DS approaches that of their peers. And thanks to greater education, inclusion and acceptance, people with DS are more active in their communities than in the past.
The Truth About Kids With DS
"Many children with Down syndrome are actually early readers," says Libby Kumin, a professor of speech pathology at Loyola College in Maryland and the author of Early Communication Skills for Children With Down Syndrome (Woodbine House, 2003). In fact, "reading is easier than speaking" for many kids with DS, she says.
To that end, Kumin recommends reading aloud to grandchildren with DS, and pointing out and identifying objects and events in the environment to help them develop their language and communication skills. Don’t assume that the child notices that the weather is warm and the birds are chirping. Instead, point out those things and strike up conversations about them. When reading aloud to a child, note when and how you are turning the pages, to help teach pre-literacy skills. But keep in mind that children with DS understand a lot more than they say, Kumin says. Introducing sign language as a means to communicate may help open up a new avenue for them to express themselves.
Most important, shower the grandchild who has Down syndrome with the same love and attention that you do your other grandchildren. Marlene Lutkenhoff, a clinical manager at Cincinnati Children's Hospital Medical Center, remembers how her entire family accepted her sister Elaine, who has DS, as they would any other new sibling. "Everywhere that we went, she went with us," Lutkenhoff recalls. "We didn't treat her as special. She was another member of the family." Today, Elaine, 54, lives on her own.
Supporting Your Child
Your child and his or her spouse may go through a grieving period after a diagnosis of DS. Stay positive. Listen to them. And help out. "Everyone is telling the parent that they're sorry," Kumin says. As the child's grandparent, you can clear the negativity from the air with your love. Hold the baby. Play with the baby. Be proud of the baby. “Let the parent know the value of their child and that you value the child," Kumin says. After all, every new grandchild is a cause for joy.
Find Out More
The best online resources on DS include the National Down Syndrome Society, which will help you locate family-support groups in your area so you can connect with other families living with DS; Down Syndrome Health Issues; and the National Down Syndrome Congress, which has a resource guide for parents and grandparents. Some excellent books for families include Kathryn Lynard Soper's Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Woodbine, 2007); Jennifer Graf Groneberg's Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome (NAL Trade, 2008); and Susan Skallerup's Babies with Down Syndrome: A New Parents' Guide (Woodbine, 2008). Informative DVDs include Down Syndrome: The First 18 Months (Blueberry Shoes, 2003) and Libby Kumin's' What Did you Say? A Guide to Speech Intelligibility in People with Down Syndrome (Woodbine, 2006).
Grandparents.com columnist Beverly Beckham writes frequently about her granddaughter with Down syndrome. Read Beckham's columns about her granddaughter being an ambassador against misinformation; about taking the girl to the doctor; and about how the recent election put special-needs children in the spotlight.
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